Since Father’s Day is this Sunday, we wanted to take the opportunity to highlight one of the amazing dads in our community. Jeff Powl and his wife, Rubi, were some of our top fundraisers in Denver this year. Their son, Jake Dylan, is three years old—and they have another son on the way! All of us, including Jake, are very excited for him to become a big brother in a few months.
This month, we sat down at the Logan House Coffeeshop in Denver to grab a coffee and check in on Jeff and Jake and learn more about how they came to be part of the Cupid’s family.
Cupid’s: Your son, Jake, was diagnosed with Neurofibromatosis a couple years ago. Was that the first time you’d heard about NF?
Jeff: It was. We noticed that Jake had several “birthmarks” and during one of Jake’s appointments with his pediatrician we asked about them. The pediatrician pointed us in the direction of another doctor who informed us about NF.
C: And how did you first hear about Cupid’s?
J: My wife and I were at the 2017 Colorado NF Symposium at Children’s Hospital Colorado. It was our first such event and it made a huge impact on me. I met several amazing people including Kristi at the Cupid’s booth. Shortly thereafter, we decided to be part of the Cupid’s Undie Run.
C: As a first time undie runner this year, what did you think?
J: I loved the Cupid’s Undie Run — the mileage is in my wheelhouse! The event was well put together and the people involved did an amazing job. My entire team had a blast and we are looking forward to 2019!
C: I’m sure you’re still learning about NF every day, but if there was one thing you wish everyone knew about it, what would that be?
J: That’s a loaded question. We are learning about NF every day and try to keep in touch with those we have met at the Symposium, Cupid’s Undie Run, and other places to learn more from those individuals. Short term is easy — I wish everyone knew what NF is, what the complications are, and how it affects the individual and their family and friends. Long term is tough — I wish everyone knew that we all have “something” going on with us. Whether it be visually noticeable like cafe au lait spots or bone deformities; audibly noticeable like a lisp or accent; or something we can’t see or hear like bipolar disorder or depression. I hope and wish we can all accept these differences and be kinder to each other.
C: We couldn’t have said it any better. Thanks for taking time to chat with us today. We can’t wait to see those upcoming baby pictures! Happy Father’s Day!
Update: We are extremely saddened to hear that doctors found a tumor on Jake’s brain near the hypothalamus after an MRI he had on Monday. Jeff requested that we include this update so that people know in case they are going through something similar and need help or somebody to talk to. If you’d like to reach out to Jeff, email [email protected] and we’ll get you in contact.
We are standing with you guys in prayer and anything we can do. Love and hugs!!
We are so proud of Jeff and Rubi and the strength they had in receiving the news about Jake and how they are trying to make a better world for him through getting donations to help find a cure for NF. They are in our prayers, especially our precious Jake.
I have 2 friends that have NF; One of which who is not doing well at all. I have taken a closer look at myself; who suffers 24/7 from severe arthritis. I will never EVER complain again. My pain is nothing compared to what these folks w/ NF are going through. God bless. XO